Prion Disease Contamination: Should We Disclose? (A)

In Case A, Rose Matthews, vice president of patient advocacy at University Hospital, has to decide how to deal with a shocking discovery about patient risk. Weeks after the death of a patient, laboratory results showed that the cause was prion disease, a deadly disease similar to mad cow disease. Because the diagnosis of this very rare disease was unknown at the time the patient’s brain biopsy was taken, the surgical instruments used for the procedure were conventionally sterilized (rather than the specialized methods required to remove prions) and they were reused in up to 100 other surgeries. Now Matthews and her team must resolve an ethical communication dilemma: (1) reveal the potential risk, albeit a very small one, that patients will develop the disease years later; or (2) choosing to protect patients from the mental anguish associated with worrying about a disease that they are more likely not to develop. Case B shows that the medical team decided not to convey this message to patients only for a disgruntled hospital worker to leak the news to the media. The short teaching note offers three possible curricula for this case, depending on the desired learning objectives: (1) Drafting a risk or crisis communication plan; (2) Create a two minute role play of an oral explanation at the beginning of an internal meeting or press conference; and (3) respond to media leakage.

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